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Saturday, July 27, 2013

It's a Purple Cupcake Kind of a Day!

Today is a Happy Day, enough so, that we will be celebrating
with purple cupcakes!!!

Wow! Can you believe a year ago today, I was giving many
kisses to my daughter, as my husband walked her back to an OR room. Then I sat
in the chair and cried…..

Last July 27th was the longest day of my life;
hours felts like days and the waiting grew tiresome. But she made it through,
and what’s even better than that is we are celebrating her 1 year post-op
surgery! What a year it has been…. I knew we would get through it, but man… it
was a long one. I am also happy to say that Kaylie has not been sick for 6 mths
straight!! That’s a first for us. 6 months after her decompression surgery,
Kaylie had her tonsillectomy… that surgery helped a lot!

Kaylie is doing so well! She doesn’t have nearly as many
headaches as she use too, no ear pains or eye pain. She still has some issues
with memory, which she will have some testing done in Sept on that, and she has
had some eye issues, that seem to be under control right now, we are watching
those issues carefully. Kaylie went to summer school this year, to try to help
catch her up from all the school she missed. I think it helped some, but not as
much as I was hoping for. Over the summer I have been working with her on
reading, and a summer bridge workbook too. But after a lot of thinking, Ben
& I have decided to have here do 1st grade again. The school is
very supportive on this decision; in fact I believe they think it’s for the
best as well. I think I am more worried about it than she is, in fact she says
she is ok with it. We had new neighbors move in across the street, they have a
little girl Kaylie’s age, who will be going into the first grade this year.
They have become good friends, and I have asked the school if it was possible
that the two girls be placed in the same class…at least this way Kaylie will
know someone. We will see what happens. Either way…. I think this is the right
thing to do.

I still get
contacted a lot though Kaylie’s blog. And recently I was speaking to one of the
moms; our first phone conversation … and she said something to me… that is
probably true about a lot of moms in the situation I am in. She told me, “I
noticed you haven’t wrote as much on your blog as you use too… so I figured
Kaylie was doing really well….” She is right. I don’t write as much as I use
to, because there is nothing to really write about. Kaylie is doing very well. I
keep in contact with Dr. Rekate, and recently he reviewed her Nov. MRI (3
months after her surgery), because it looked so good, he feels she does not
need a MRI right now. She will probably have one next year. I am very content
with this, in fact happy… there are not any other words to say except that she
is doing great!

I put this one up by itself , b/c it was bigger than the one above.

Kaylie’s scar looks GREAT too!!! Don’t you think?? This pick
was posted on my facebook…. Not only to show how well she is doing, but also
the sheer need of awareness! I continue to be heavily involved in The American
Syringomyelia & Chiari Alliance Project, leader of the Oklahoma Chapter.
I’m hoping next Spring to bring the first ASAP walk to OKC, and continue my
efforts in showing support to patients and more education to our medical
community.

If there is one thing I could tell every parent and even
adult patients out there starting this journey, is to find the right doctor for
you and your family. One may be great for me, but not right for you, and vice
versa. Being comfortable and trusting your doctor is so important.

We like to Thank all our friends and family that have always
been there, and never left our side. We Thank the City of Moore, and
surrounding cities for your generosity, prayers and good will. We especially
Thank The Moore Police Department, for they are our second family, and always
will be.

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About Me

I am the owner & writer of this blog. I am also the mother of Kaylie, Mason and Abby. This is a blog of our personal story dealing with Chiari, and related conditions. This is not to substitute for medical advice, please see a physician for that... this is just our story and our experiences.

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